Biobanks are getting bigger and the human biological samples that are stored in the freezers have increasingly long-term utility for research. The samples can be used not only in one study, but also in several different studies. Not only in today’s research, but also in future research. This creates research ethical tensions. Ethics requires that […]
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Do you use Google Maps to navigate in a new city? Ask Siri, Alexa or OK Google to play your favourite song? To help you find something on Amazon? To read a text message from a friend while you are driving your car? Perhaps your car is fitted with a semi-autonomous adaptive cruise control system… If any software or machine is going to perform in any autonomous way, it needs to collect data. About you, where you are going, what songs you like, your shopping habits, who your friends are and what you talk about. This begs the question: are we willing to give up part of our privacy and personal liberty to enjoy the benefits technology offers. Want to know more about the collaboration between SIENNA, SHERPA and PANELFIT? Read the editorial in Orbit (Setting future ethical standards for ICT, Big Data, AI and robotics: The contribution of three European Projects), or watch a video from our joint webinar on May 20, 2019 on YouTube (SIENNA, SHERPA, PANELFIT: Setting future ethical standards for ICT, Big Data, SIS, AI and Robotics).
Continue readingThe human is a miserable being. Although we are pleased about the new and better-paid job, we soon acquire more costly habits, richer friends, and madder professional duties. We are back to square one, dissatisfied with life and uncomfortable with ourselves. Why can life never be perfect? Discontent makes us want to escape to better […]
Continue readingPublic health focuses on the prevention of disease and the promotion of health on a collective level, that is, the health of the population. This distinguishes public health from medical care and the doctor-patient relationship. In a clinical setting, the doctor discusses treatments with the patient directly and risks and benefits are assessed in relation […]
Continue readingAllegedly, there are over 8.000 so called predatory journals out there. Instead of supporting readers and science, these journals serve their own economic interests first and at best offer dubious merits for scholars. We believe that scholars working in any academic discipline have a professional interest and a responsibility to keep track of these journals. […]
Continue readingWe need to do research to know what people think is important in genetic risk information. What they prefer to know. But how do we find out? One way is to ask people to answer questionnaires. One problem with questionnaires is that they ask one thing at a time. Do you prefer a hotel room […]
Continue readingThe emergence of several national level brain initiatives and the priority given to neuroscientific research make it important to examine the values underpinning the research, and to address the ethical, social, legal, philosophical, and regulatory issues that it raises. Neuroscientific insights allow us to understand more about the human brain: about its dynamic nature and […]
Continue readingIt is well known that patients who are asked to participate in cancer trials are tempted by the therapeutic misconception. They believe they are offered a newer and better treatment, when in fact it is about research into an untested treatment. When researchers use genetic tests to develop personalized oncology, even more misconceptions can arise. […]
Continue readingOutside of their practical contexts, simple messages quickly lose their meaning. Recall what it is like to find an old Post-it Note: “Don’t forget the disk!” – What disk? The risk is great that we invent a context. Incomprehensible messages awaken our imagination. Similarly, messages about genetic risk need practical contexts that make the information […]
Continue readingRandomized controlled trials (RCTs) are considered to be the gold standard for determining a causal effect of medical interventions. To achieve this aim, possible confounding factors must be avoided. This implies excluding many patients from participating in the trial, for example, patients with concomitant conditions. A negative consequence of these exclusions, however, is limited generalizability. […]
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